November 2019 Last Chemo Treatment and Ringing the Bell

Doctors Appointment

This was my last oncologist appointment for a while...a month.  I saw the nurse practitioner again and we talked the chemo side effects.  I still had the mouth sores and sore throat for days.  Also a new side effect spots on my hands and over my body.  I don't recognize my palms. The neuropothy in my feet go from getting better to "why won't it just go away".  

We talked about surgery and getting the port taken out at surgery.  Apparently the oncologist gets a say in IF the port can be removed during surgery or if they think it needs to stay in, Their office will look at the MRI and advise.  That was a shocker.  I just assumed...still I'll continue to believe things will go as planned in my head until further notice.

Radiology Appointment

I had a consultation with a radiologist.  I have to have radiology if I get a lumpectomy. Okay great. The radiologist was SMART.  He gave me the rundown on my cancer, tests, chemo drugs, surgery WITHOUT looking at notes.  He'd studied the notes and remembered them.  Impressive!

He told me that it would be EVERYDAY for 4-6 weeks depending on the results of the pathology report. EVERYDAY...but it would only take 10-15 minutes and I wouldn't get sick like with Chemo. Maybe I'll be tired but not sick. Okay. This seems like the last step in the process and then it is just check-ups. We will see. 

Last Chemo Treatment & Ringing the Bell

Getting to the LAST Chemo treatment was a PROCESS. It started in July the Summer and ended in  November in the Fall.

Before this session I gave a lot of thought about the gift I would give my Chemo nurse.  She and I talked about "eventually" she was going to retire.  I found her a Nurse retirement cup on Amazon. It's something I thought she would appreciate.

My son went to this last session with me.  I really appreciated his support. When you are used to doing things yourself it's powerful to learn who loves you.  Love is about moments.  Being there when the moments count.  I told my son he was a great son. 

October 2019 3rd AC Chemo Treatment, Neulasta and Estate Documents

3rd AC Chemo Treatment

Another chemo treatment down. The chemo room was almost empty when I got there. That was a first. The lady who is a crafter was happy to see me. She had made some snack holder and wanted to show them to me. Other than talking to Loretta it was uneventful.

This is the next to last Chemo treatment so my nurse Brenda talked to me about ringing the bell the next time I come and what to expect. I'll ring the bell, they will take my phone to take video and a picture, I can invite others, I will get a certificate. That is interesting to me.  I wonder who came up with ringing the bell as the way to end this part of the Cancer Process.

Getting AC is not bad it is the after effects that's a bear and is wreaking havoc on my body.  This level of tired is beyond anything a human should endure. It is so bad if I walk (slowly) upstairs to get something I have to lay on the bed to rest before I go back downstairs. Since being on AC I've walked around the block once and had to rest on the benches to make it around.  I haven't walk around again because I don't want to pass out.  The exhaustion is real.

Neulasta Shot and After Effects

Well, I thought after the last shot verses the patch that I had found a way not to be balled up in pain...not so.

Somehow after this Neulasta shot I was in the same level of muscle pain as the patch.  I thought I was going to be okay until Thursday afternoon and my muscles ached and locked up. I was in a ball for two days again!  My nurse also told me even after my last chemo shot that I should get the Neulasta shot so I don't get sick.

O-k-a-y, so one more shot of this ridiculous drug.  It is on my list to research it  later.  I can't do it now because I'm not trying to buck the "system".  I'm afraid what I'm going to find is that some company came up this way of keeping the chemo shots on schedule (OR MONEY COMING ON A ROUTINE BASIS) for this cancer treatment "system"....however it literally incapacitates those taking it.  NEULASTA IS WORSE THAN CHEMO! 

There is one cancer treatment lady I met early on name Marie.  She has the same type of breast cancer that I have and going through the same treatment plan. She wasn't there so I got concerned. I texted her to check on her and she said her white blood cell count was too low for Chemo mostly BECAUSE her insurance company did not approve the Neulasta.  Okay...deep. Again this Neulasta keeps the money flowing into the system and I don't think its necessary but will delay treatments like it did Marie.  I mean delaying treatments by MONTHS because instead of getting a chemo shot every other week it would getting  a hit monthly.  Again...I'll research this AFTER this is all over.

October 2019 2nd AC Chemo Treatment,Costs and Politics

Follow-up to 1st AC Treatment and Neulasta

Before I can write about the 2nd AC Chemo treatment I need to talk about the Neulasta patch.  I'll have to some research on Neulasta because it is WORST than chemo. The next morning after the patch activated I could hardly move.  

I could hardly get out of bed.  Every muscle in the core of my body hurt.  If I moved it hurt. The next day about the same, it hurt to move.  Between the Chemo, Neulasta, Nausea medication it was a two week hell ride. I learned that not all Chemo drugs are the same. 

Doctor's Appointment

So, you have to go to a doctor's appointment between treatments.

The doctor was unavailable so I saw the nurse and went though the process of explaining how things were going. It feels like a check the box type of thing, but I am focusing on being kind during this process.  Just be kind and be aware of how difficult that can be at times.  Just go and be kind to everyone you meet that is my mantra.

A Day In The Life of A Cancer "Treatment" Patient

Waking Up

...is a challenge.

5:30 a.m.
Wake up and say good bye to my son and tell him I love him as he goes off to work. That might be the last words he hears from me so I try to sound as upbeat as I possibly can.  I don't know what the day will bring.

Now that I'm up I remember my body hurts.

I remember I don't have anywhere to go.  I remember I don't WANT to go anywhere...but I'm up.

Alive.

I just lay there and think about getting up, dressed and heading off to work.  Something I've done for over 30 years and I figured out the other day that I've had 18 different jobs.  Sitting there WANTING to do that.  Good grief, never thought I'd WANT to be able to go to work, but now I do.

That's not my world now...

...so I get on my phone to see what's happening in the world.

I'm just trying to make sure no major/crazy issues are happening in the world that would leave me in limbo during cancer treatment. That's a fear....I'm half-way through Chemo I need to finish that, have surgery and radiation. If the world can just keep it's sh*t together that long.

Aside...
Cursing - I used to curse like a sailor in my 20's and 30's.  I abruptly stopped once I heard my son curse when he was in his teens. Now after going through this sh*t; I'm cursing in my head all the time.  It's so insane going through this...please someone who is/has gone through this and has NOT cursed in their head reach out to me because I'd like to meet you. You don't exist...this sh*t is crazy.

7:00 a.m.
I can still be on the phone just seeing what's happening. I run across an article about the police chief where I used to work is retiring at the end of the year for 2 months then coming back for 6 more months to get them thru the Republican National Convention.  I think back on working the Democratic National Convention...great times and I need to write an article about that experience...  Then I go back to thinking about what the Chief is trying to do and HOPING that:

1. I'm alive long enough to receive my Charlotte pension, and 
2. The pension fund in NC isn't bankrupt by the time I get it.

8:00 a.m.
Think about getting up but it takes so much energy, so I decide to stay in bed and do some bible study.

I'm up to Joshua Chapter 18.  I have to have three bibles to really understand any of this and one of the bibles is the Good News Bible...which has pictures.

All I keep thinking as I'm reading the bible from Genesis to Revelations (including the Apocrypha -hidden books) that IF GOD WANTED ME DEAD I'D BE DEAD.

I stayed in the book of Numbers for a very long time...so long, so long... because when I got to Chapter 16 I was dumbfounded. It is about the rebellion of Korah, Dathan and Abiram. God opened up the earth and the men, their families, and animals went into the earth alive. Instantly God killed them. I just kept reading that chapter over and over again. It was no joke.

I can do about 30 minutes to 1 hour of bible study and then I want to fall back to sleep. It's heavy material.

9:00 a.m.
I have to get up.

I take a shower and the hot water feels good on all the pain spots over my body. Physically taking a shower takes A LOT of energy.

After I take a shower I have to get back in bed to rest for 10 minutes BEFORE I can wash my face and brush my teeth. I don't have enough energy to continue to stand up.

I make it though that and then have to do my saltwater baking soda gargle or I will get mouth sores. I do that and then put on Oil of Olay on my face.  My eyebrows are almost gone now. My eyes look like my mom's when she was sick.  I could always tell when she was sick or getting sick by her eyes.  My eyes look like that now. No life.  Dead. Bloodshot. I get over that I'm looking at myself and I look like my sick mother then I put on chap stick all over my lips or they will crack.

Almost done.

I put on my underclothes and then lotion my entire body because my skin feels and looks like leather. I don't recognize my hands and feet. Oh my poor feet.

11:00 a.m.
Somehow its 11:00 I don't know how that happened.

I put on some clothes - Shorts and a black t-shirt.

The phone rings. Crank call.

I'm hungry but don't want to eat.  My chest hurts. I go get water.  Just stay hydrated that's the best I can do. Then no, I need to eat something.  Grapes, yogurt and nuts is all I can manage to eat.

I get back on line and read about a lady who "battled" breast cancer and has died of the "complications of cancer". Her name was Wendy Chioji.

I just keep thinking once you think you've "beat" cancer you don't.  It comes back with a vengeance. You're just buying time. Then I look out the window.  The wind is blowing.  It looks like it's going to rain.


12:30 p.m.
I go downstairs to get on line on the laptop to see what checks have cleared the bank. Still wondering the easiest way to get money from the VA credit union to the NC Credit union so I can actually make money on the money sitting around in a little to no interest account. I don't feel like dealing with that today.

I turn on NPR and listen to them talk about stuff.

Half the day is gone. I'm just grateful I'm up and can get out of bed today.  

I'm grateful I'm not getting Chemo today. This sh*t is hard. Ridiculously hard. I'm hungry again but don't want to eat.

October 2019 Chest CT Scan, Chemo #1 of AC and Other Thoughts

Chest CT Scan

Had a CT Scan because the Oncologist saw a tiny spec of something in my lungs during the 1st Scan back in June. She wasn't very concerned with it because she said we have to take care of the Breast Cancer first.

She didn't think what she was seeing was lung "cancer" but if it was she said the chemo drugs I was on for breast cancer was used for lung cancer so he would go away in theory.

 I can remember when she told me she found something in my lungs and I couldn't look at her as she was telling me about it.  My dad died of lung cancer.  I couldn't handle it.

I told her that back in the 1980's I was diagnosed with this mysterious thing called Sarcodosis.  I never had any effects of it.  Sometimes it would show up on Chest XRay's but hadn't in the last 20 years so I forgot all about it.

I still think of it as  fluke or something.

The Oncologist said, that yes it could be sarcoid but she wouldn't know for sure unless we did a biopsy. She said at that time in June we would just watch it and see what happened.  So after the end of the 1st round of Chemo drugs she ordered a followed-up with a CT Chest scan.

So I had an appointment with the oncologist so she could give me the results of the CT Scan and we could talk about the next round of Chemo drugs.

Going into the doctor's appointment I really didn't know what "the best" results could be. If the spot in the lungs was gone then that meant it probably was cancer...and had it spread from the breast lump or just a new cancer location.

If it was still there what would that mean?  So I went into the appointment just asking for the best results whatever they could be. 

At the appointment the Oncologist walked into the room, we said hello and hugged.  Then she handed me the CT scan results and said we got "the best" results.  The tiny spot is still there in the lung but it's more than likely not cancer.

It is the same size it was during the 1st scan so it has shrunk or grown which indicates to her its not cancer. If it were cancer it would have grown in the three months or it would have shrunk/disappeared from the Chemo for three months but it did neither.

She said yes it could be the sarcoid but we would need a biopsy for that and for now we are going to deal with the breast cancer and continue to watch what happens to the spot. Also on the results of the CT Scan was they did not see any portion of the breast cancer mass!  The report actually said that it could have been surgically removed...that's how much nothing was showing up on the scan.

All "the best" possible results.  We talked about the next round of Chemo drugs and how bad it "could" get...not that it had too but it could.  Then I thanked her and tears welled up in my eyes.  I couldn't ask for a better doctor.  I trust her and that is not typically of me and the medical professionals.

Chemo#1 of AC

Next day new Chemo drugs started.

It was great to see all the nurse oncologist and I saw some of the other Chemo patients that I hadn't seen in a few weeks.  That was great!  My son went with me to this appointment because I didn't know how I would react to the new drugs. So it started with the pre-meds which lasted about 45 minutes THEN I got the strong Red Chemo that lasted 15 minutes than the C drug for 1.5 hours.  It was finished in 2 hours which wasn't bad. I instantly felt that impact since I hadn't had Chemo drugs in 3 weeks.

Then it was something new...Neulasta a patch that goes on your arm or stomach, keep it on for 28 hours and in 27 hours it pumps medicine in my body to help increase your white blood cells so you and keep on track for Chemo sessions.

By the time I got home it was instant tired, go to sleep.  The neuropothy in my feet is still there but has gotten a little better.  I was so tired my feet didn't even keep me up, but it was a bad night.  Sweats, having to drink water throughout the night, feeling like I wanted to throw up but didn't....OH NO!!!  My only grace is this is only for 8 weeks and it's only 4 hits as I now call these Chemo sessions.

I got a call from the nurse navigator  the next morning which was timely!

I asked her questions to make sure I understood the process. She gave me the same information the nurse oncologist gave me about Neulasta and how to deal with nausea and take the medicine.

We also talked about the process AFTER chemo is FINALLY done.  She recommended to have the Oncologist make the appointment for the MRI then make an appointment with the surgeon in 5 days.  He will have MRI results by then and will determine the type of surgery.

From what she can tell from the Chemo results she said I'm a candidate for Lumpectomy which is in/out patient surgery and recovery is 2-4 weeks. I can see the light at the end of the tunnel.

Other Thoughts

Medical Bills

I'm still dealing with the $5,100 bill from Sentara Williamsburg for a Biopsy back in May 2019.  The insurance company says I should owe $3,500. Finally able to get Sentara to research this and they agree something is wrong and they have put the bill on hold and asked me not to pay until they research it.  I'm already at the $10,000 maximum out of pocket max...so no more medical bills for me until July 1, 2020!

All of this has made me want to learn more about Health Insurance. I've done a little research and it is interesting.  Actually becoming an insurance agent in VA is easy entrance...study, pass the test, find a broker...it is similar to becoming a real estate agent.

What Can You Do For Someone Going Through Cancer Treatment?

1. ASK QUESTIONS ABOUT THEM - this seems simple but it's goes a long way.  I can't tell you how appreciative I've been for my weekly text messages of people asking me how I've been doing. 
2. DO NOT send a text or a call or a visit and you talk about yourself, normal/everyday stuff and ignore what the cancer patient is going through.  This is NOT helpful when this person is more than likely experiencing side-effects and their life has been tossed out of kilter.  Even asking about their cancer, chemo and trying to understand is helpful because that person can talk about it and feel like someone cares.  
3. DO NOT talk about what you know about chemo and the experience because SOMEONE ELSE who had it told you about it. If it is YOUR cancer experience that is okay to share but second hand experience...don't focus on that.  Everybody's experience is different...just listen and ask thoughtful questions about THAT person who you are listening to.

Cancer Walks and Support

I've been thinking about these annual walks and wondering exactly what they accomplish, how they help cancer patients, and where the money goes?  They don't help defray the cost of treating cancer it seems, maybe it goes into the clinical trials that I keep hearing about?  I just don't know the purpose and I'm hopeful that I'm wrong and they are doing good work.